this biliary atresia experience

EXCERPT FROM EMAIL TO A FRIEND “. . . as for Rose, Shane reports that she had her most settled night ever. . . He on the other hand couldn't sleep - the only time in recent memory that he's had the opportunity to actually SLEEP alongside Rose, and he had insomnia. Head filled with crazy theories about why Rose has pancreatitis, so he had to hop onto the internet. The doctors are encouraging him to do his wacky research - that's the odd thing. . . Anyhow, who knows - he might find something about pancreatitis.”

EXCERPT FROM MASS EMAIL TO FRIENDS An email to bring everyone up to date, after a very emotional month or so. “ long time off air. . . Still in hospital with Rose, who continues to struggle to gain enough weight to make a transplant a safe enough procedure. We've been in since 2 December, and it's pretty tricky juggling everything, as you'd imagine, but I think we're staying focused most of the time. The adjustment process continues to work away at us. Lots of medical spanners remain in the works for our Rose, the worst of them still chronic pancreatitis. Aaarrgh! They still have no idea what's causing it, and haven't succeeded in stopping it either. Pancreatitis isn't even something that happens in kids with Rose's liver condition, so she has us all scratching our heads, and Shane trawling the internet for clues, night and day. Oddly, despite all the trouble with her kooky pancreas, Rose's liver is kind of holding its own (as much as a liver can, i...

Occasionally, Rose leaves her room to visit one of the various departments in the hospital. She loves going for a pram ride, and blows kisses to everybody she meets along the way.

Allowed a drink of water from a bottle for the first time in months. Rose hasn't forgotten how to suck. It made us cry to see her do this simple thing again.

Tennis in the morning, and talking with the hospital's fantastic child psychiatrists in the afternoon. The kids are adjusting well to the situation.

the long corridor in the hospital and the familiar lift ride to the fifth floor

Special leave overnight for New Year's Eve. Last night we brought Rosie along to our friends' party. We rugged her up and sat in their rambling garden in the balmy night air, enjoying the opportunity for Rose to gaze at the moon and stars. One kind acquaintance, a father of four, held his arms out to receive Rose the moment we walked into the garden. He swaddled her up and sat with her for ages. Another good friend of ours wept onto Rose's head and found herself unable to speak. It's a shock for some to finally see the extent of Rose's malnutrtition. We have great friends who shower us with their love.